Tuesday, August 24, 2010

The scare.

So, night time came. Everyone but Grace and I had left the hospital (of our family, I mean), and we had settled in for bed. As I said before, Gracie's blood pressure had been coming out quite high for her. The nurses kept telling me that it was just because of her moving around a lot while they were taking it, but I was still nervous. Blood pressure and intracranial pressure go hand in hand, so ANYTIME I see a high number, I start to worry. Anyway, 8 pm came and Grace was tired, so into her little cage she went. I sat with her until she fell asleep, and then I left the room to get a drink. I came back, about 5 minutes later, and immediately checked on her. She was sleeping peacefully.I hadn't slept at all the night before, so I decided to pull the chair out and lay down. I was sound asleep for about an hour - then we got a neighbor. I decided to get up and use the computer for a little while--which of course turned into an hour. Suddenly, I realized I hadn't checked on her in an hour. So, I jumped up to look in on her. I did my old standard- stuck my fingers under her nose. She seemed fine. As I was pulling my hand back, it felt warm and wet though. I thought she must have been drooling pretty badly, so I went to wipe her chin. Then I realized it was not drool. The entire side of her bed, shirt, her head and face were covered in BLOOD. I gasped, ran to the light switch and flipped it on, and ran back. To make sure I was seeing right...and I was. It was everywhere- all through her hair and her pillow was saturated. I ran. I have never run so fast in my life- and I actually knocked my roommate's mom right over. I forgot all about the call button, and ran into the hallway, screaming help. All that kept going through my mind was the doctor saying that bleeding from the nose or ears was VERY BAD. Nurses came running from seemingly every direction. One heard me screaming from the elevator and stopped the elevator to come running. The first one to get there was a man and he asked what was going on. All I remember is saying" her head is covered. Her head is covered." He ran in and immediately got on the loudspeaker. "ALL medical personnel to room 39." Gracie's nurse came running down the hall at that point, she was on break. The man that was in the room was talking to someone, and I could hear him telling the person that there was no point of origin for the bleeding. He was calling for bags of blood- that's how much blood it looked like she had lost. I heard her neurosurgeon paged, and I started to really get nervous. Then, her nurse came out and told me Gracie was fine. Her IV had infiltrated, and she must have had her arms up over her head when it happened. The first nurse that went in didn't know her or that she even had an IV, so he didn't know to look for it. As soon as the nurse told me she was ok, I let out my breath...and passed out. When I came to, it was like it had all been a dream. She was all clean and in a nice clean bed. The only hint that anything had happened was the small blood stain on her new PJ's.

Monday, August 23, 2010

So, the next morning came, just as early as any other day. The sun started peeling through the huge window in the hospital room, and Grace started to wake up. Never mind that she had only really been asleep for 2 hours!! She asked for her cup immediately, and then she wanted some cereal. Of course, the doctor had made her NPO because they planned to sedate her for a CT. So started the game of preoccupation. Before long, we were being moved to a different room, one with a lot more leg room, and where she could have a BED instead of a crib. We had just gotten settled in there and a different pediatric neurosurgeon came in to talk to me. He told me that there was definitely something there, but there was really no way for to tell if it was new or old. His plan of action would be to watch HER, to watch for any signs of a worsening bleed. This was right up my alley. It probably seems as though I really enjoy having her go through CT's- but I don't. He told me all of the signs of it worsening- blood or drainage from ears and nose, worsening headaches, vomiting. He left, and I felt much better about everything.

Later in the evening, we changed rooms again. They decided she was stable enough to go to the Intermediate care instead of the PICU. I was none too excited about this, simply because it was late evening and I had gotten used to those nurses. We got everything moved over and got to know the new nurse, though. Gracie and I were out walking the halls and she met up with a family. It amazes me how quickly she can get a hold of someone's heart. She just sat and talked to that family for a good half an hour. When we left, the grandma thanked me for spending time with them...she said Gracie had just made their day. What a blessing!!

Later in the night, I got a real scare. As a matter of fact, I even passed out! More on that later though...

Thursday, August 19, 2010

Another day...another hospital.

Let me just start this off by saying- I do not have some strange hospital fetish. Quite honestly, I'd much rather scope out the local shopping than the local neurosurgeons when I go on a trip. That doesn't seem to be what's in the cards for me at this point, though, LOL. So on to the explanation!!

Gracie starts school on September 8th. SCHOOL!! Until then, she is on "summer vacation" from all of her therapies. So, we decided to do a bunch of fun stuff in the next 2 weeks, beginning with a trip to PA to see my brother and his family. We got there on Monday, and she was beyond excited. She talks about my niece and nephew incessantly, so she's always excited to get to see them. The plan was to stay until Wednesday morning, then head straight to Rochester for an EEG. We were having a TON of fun, the kids were playing and having a great time--then Gracie fell. I was right there and saw the whole thing. She was crawling up the 2 small steps to Cassie's bed, lost her footing, and fell. I reached out and caught her, but not quick enough. She, OF COURSE, came down on the shunt side of her head. After close inspection, I decided she had hit her ear, because it bruised up quite quickly. She needed some comfort, and then she was right back to jumping in the bed and playing with the kids. Like I often do, I shelved the injury. I knew that I would be doing neuro checks later on, though!

Fast forward to the next day. We went to Sonic ( a drive up restaurant) with the kids. They don't have bathrooms, so I walked her to a grocery store across the parking lot. She was dragging quite a bit, and I asked her if she hurt, but she said no. Then when we got in the store, I told her to look up at something on the ceiling. She looked up, and then quickly said "Mommy, that hurts." and looked down. I asked her over and over if it hurt to look up and she continuously said yes. She hadn't had a nap though, so again, I shelved it. When she gets tired, she often says that things hurt, just as a way to get out doing it. Half an hour later though, we were playing putt putt golf, and she just suddenly threw up. That's when I started to worry. So, I packed her up, amidst many tears, and took her to the hospital. We got there and it was crazy!! The hospital is right in Harrisburg, and it's not a great neighborhood. After we got triaged, the people in the waiting room told me they had been waiting 8 hours. I felt terrible, because I knew we were going straight back- but thankful at the same time that the hospital recognized the time sensitive nature of her problems. Within 1/2 hour of being there I was really wondering why I'd even brought her. She was acting perfectly normal, she was able to look up, she hadn't thrown up again. I decided to stay though, just because of all the DIFFERENT symptoms. We went up for a CT scan, she had some blood work, and a chest x- ray ( for what I have no clue- I think all of her DX's scared the poor doctor!)...and then waited. And waited. And waited. Just when we thought we couldn't wait anymore ( 3 am), the doctor came in. I FULLY expected him to say that the CT looked fine, and that we could go home. Instead, he told me that the radiologist had found a subdural hematoma, and that we would need to be transferred to Hershey to be followed by a neuroSURGEON. The radiologist had even called in a second opinion. So, of course, I got scared. The doctor set up an ambulance, I paced, my mom and Josiah came, I paced. The ambulance got there and I walked her out, kissed her and jumped in the car to do chase. It was quite a chase too...she drove like a madwoman. 
We got to the Penn State Children's Hospital and went to the 7th floor PICU, where we were met by a neurosurgeon. He looked over the scans right away, scheduled another CT, and made her NPO. Basically, he was planning on surgery. Her blood pressure kept raising with each new reading, which is not a good sign. We got her settled in, and I settled in for a very fitful night.

My poor little sweetie in her straightjacket so the nurses could take her blood. This BROKE my heart. We were taking pictures to try and calm her down, but it didn't work.
 I will finish tomorrow!

Sunday, August 1, 2010


I write this blog with the intention that one day, my children will read it. I pray that as they look over the pictures and see all that has happened in such a short time- all that God has done for us as a family- that it will make it real to them. See, we as adults are getting all of the blessing from these trials. Gracie and Josiah have not yet learned to walk with God, or what a sweet fellowship there can be---especially in times of great need. I've often said that I got extremely close to God while Gracie was in the NICU. That is a blessing, but it's certainly not the way it should be. I was not right with God when Gracie was born, or for quite a few weeks afterward. Oh believe me, I cried out to Him and begged Him. I held Him at His Word for many things...but I was not right with Him. I was angry at Him. In my human mind, I didn't believe that He had listened to my prayers while I was pregnant. Or, maybe He had, but He just didn't care enough to answer them. It took weeks for me to allow Him to comfort me. It is one of our most fervent prayers that when our kids go through the storms of life, they will ALREADY be in sweet fellowship with Him. That when hurt and heartache come, they can cry out to Him and receive His comfort right away- without feeling the guilt or shame that come along with USING God only when we need Him. I praise the Lord, that when all of our health issues began in November, we were both enjoying a close relationship with our Savior. What a difference that makes during a time of REAL trial!

A while back, I posted about the lady at WalMart who gave unsolicited advice about potty training. At the end of that post, I gave my kids some lessons to be learned, but I forgot the MOST important one. Be forgiving. My sweet Gracie girl, people are going to hurt you. People are going to ask you stupid questions and stare at the braces on your legs. People are going to tell you that the medications you take are unnecessary. People will make fun of you because you are not exactly like them. Josiah, you will have to watch as this happens, and if we train you right---it will hurt you to see your sister hurt. Kids might make fun of YOU because you lag behind with your big sister. BE FORGIVING!!! Always remember that people are just that---people. Be always ready with a smile, a quick explanation, and love- then go to God (and Mommy) with your tears. We love you both.

"But I say unto you which hear, Love your enemies, do good to them which hate you, Bless them that curse you, and pray for them which despitefully use you. And unto him that smiteth thee on the one cheek offer also the other; and him that taketh away thy cloak forbid not to take thy coat also. Give to every man that asketh of thee; and of him that taketh away thy goods ask them not again.  And as ye would that men should do to you, do ye also to them likewise. For if ye love them which love you, what thank have ye? for sinners also love those that love them. And if ye do good to them which do good to you, what thank have ye? for sinners also do even the same. And if ye lend to them of whom ye hope to receive, what thank have ye? for sinners also lend to sinners, to receive as much again. But love ye your enemies, and do good, and lend, hoping for nothing again; and your reward shall be great, and ye shall be the children of the Highest: for he is kind unto the unthankful and to the evil. Be ye therefore merciful, as your Father also is merciful. Judge not, and ye shall not be judged: condemn not, and ye shall not be condemned: forgive, and ye shall be forgiven."
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